Newborn Screening Awareness Month: The Push for Increased Screening for CMV
This September, we recognize Newborn Screening Awareness Month, highlighting the critical role of newborn screening in identifying and treating conditions that can severely impact a child’s long-term health and survival.¹
Legislators, advocates and families have been raising awareness about the need for increased screening for congenital cytomegalovirus (CMV), a common virus that can cause birth defects.² There is no national program to screen every newborn for congenital CMV in the United States, despite the fact the majority of affected infants are asymptomatic at birth.³ Infants born with a CMV infection can suffer from long-term health problems, including hearing loss, vision loss, developmental and motor delays, and seizures.⁴ Routine screenings of infants for the illness can allow for timely treatment and interventions.⁵
What is Congenital CMV?
CMV is a common virus, and more than half of U.S. adults over the age of 40 have been infected at some point in their lives.⁶ Yet, most people are unaware that they have been infected with CMV because symptoms of CMV infection are mild and often go unnoticed.⁷ However, if a woman becomes infected with during pregnancy, they can pass the infection to their unborn babies, resulting in congenital CMV.⁸
CMV is the most common infectious cause of birth defects and developmental disabilities in the U.S. Congenital CMV infection occurs in approximately one in 200 newborns⁹, and one in five infants with congenital CMV infection will have severe, long-term health problems.¹⁰
What Can We Do?
The first step is educating parents and healthcare providers about this life-altering disease. Despite being able to pass it in pregnancy and the serious risks of pediatric birth defects, 91% of women have never heard of CMV.¹¹
The good news is there are simple steps to help mitigate the risk of transmitting CMV during pregnancy.¹² Young children are a common source of CMV.¹³ Simple hygiene practices – including thorough handwashing, avoiding contact with saliva when kissing a child, and avoiding sharing food, drinks, and utensils – can help mitigate the risk of contracting the virus.¹⁴
Parents are not the only ones left in the dark – healthcare providers also need to be educated about CMV. According to one survey, 91% of healthcare providers say they would like more training on CMV to better discuss it with their patients.¹⁵
The Importance of Universal Screening
Adjusting the standard of care to implement a universal screening protocol for all newborns for CMV at birth can also help ensure newborns born with congenital CMV are diagnosed early, potentially improving treatment and outcomes.¹⁶ Currently, there is one treatment for congenital CMV – oral antivirals – ideally given with in the first month of the infant’s life.¹⁷ Implementing simple newborn testing as the standard of care could change thousands of lives, allowing newborns to receive this treatment.
Several states have implemented targeted newborn screening for CMV, such as when a newborn fails a newborn hearing screening.¹⁸ States are also adopting universal newborn CMV screening, which requires every newborn to be screened for CMV. Minnesota was the first state to enact universal newborn CMV screening in 2022.¹⁹ New York provisionally added CMV to its newborn screening panel in 2023.²⁰ Connecticut is set to enact universal newborn CMV screening beginning in 2025.²¹ Currently, in Canada, Ontario and Saskatchewan have universal newborn screening for CMV.²²
Last year, the STOP CMV Act was introduced in Congress to raise awareness of CMV and to encourage increased screenings of infants for the illness to allow for early treatment and interventions.²³
Moderna is also researching a potential vaccine candidate to address CMV infection, which is currently being studied in a Phase 3 clinical trial in women of child-bearing age.²⁴
Together, we can build a future where families and healthcare providers are well-informed about CMV and have access to the resources and care they need.
¹https://www.cdc.gov/newborn-screening/about/index.html
²https://www.cdc.gov/cytomegalovirus/about/index.html
³https://www.nationalcmv.org/about-us/advocacy
⁴https://www.cdc.gov/cytomegalovirus/hcp/clinical-overview/index.html
⁵https://www.nationalcmv.org/about-us/advocacy
⁶https://www.cdc.gov/cytomegalovirus/hcp/clinical-overview/index.html
⁷https://www.cdc.gov/cytomegalovirus/about/index.html
⁸https://www.cdc.gov/cytomegalovirus/hcp/clinical-overview/index.html
⁹https://www.nationalcmv.org/default.aspx
¹⁰https://www.cdc.gov/cytomegalovirus/congenital-infection/index.html
¹¹https://www.nationalcmv.org/default.aspx
¹²https://www.nationalcmv.org/default.aspx
¹³https://www.cdc.gov/cytomegalovirus/congenital-infection/index.html
¹⁴https://www.nationalcmv.org/default.aspx
¹⁵https://www.clinicalleader.com/doc/moderna-addresses-awareness-gap-builds-community-trust-to-boost-cmv-trial-recruitment-0001
¹⁶https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9680485/
¹⁷https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10475861/
¹⁸https://www.nationalcmv.org/about-us/advocacy
¹⁹https://www.nationalcmv.org/about-us/advocacy
²⁰https://www.health.ny.gov/press/releases/2023/2023-09-29_newborn_screening.htm
²¹https://www.nationalcmv.org/about-us/advocacy
²²https://www.ncbi.nlm.nih.gov/books/NBK604835/#:~:text=Currently%20in%20Canada%2C%204%20provinces,%2C%20urine%2C%20or%20saliva%20tests
²³https://www.nationalcmv.org/about-us/advocacy
²⁴https://clinicaltrials.gov/study/NCT05085366